By: The CFS Patient Advocate:
In no sense did this committee, with a few exceptions, project the sense that they had ever heard anything about XMRV, or CFS before - even though there had been at least one earlier meeting on this subject - and maybe two.
A number of the committee members invented their own illness acronym - CSF and XRMV - and used them repeatedly.
The bottom line was that at the end of the day – after listening (or not listening) to the days’ presentation - the committee, during their discussion, seemed totally unmoored, unable to recognize what they were voting for, what the implications were, or even, most absurdly, what a yes or no vote actually meant.
The discussion was stunning in its absurdity, the greatest sense of unreality that the PA has ever seen – and this is really saying something. The Patient Advocate was certain that he knew what was going to happen, but, for a few moments, the PA panicked with the realization that ... Read more>>